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Itchy skin, tired, need to vent - oh and hello!

Hi all,

I was compelled to join a forum tonight because dealing with lupus is something that is hard to understand if you're not dealing with it yourself, I think.

I was diagnosed about a year and a half ago, just before my son was born, as I had been itching TERRIBLY throughout my pregnancy. Like, deep itching, I used to use a chopstick to itch myself, and BROKE it. Nothing could soothe it. I would sleep for two hours a night, sometimes no sleep at all. It was terrible.

I finally got diagnosed at 32 weeks after Drs patronising and ignoring me for months. And treating me for something else. (A liver disorder.) I have SLE, possibly Sjogrens. I take thyroxine, as I am hypothyroid, and have taken it for years. Hydroxychloroquine made my itching worse so I stopped taking it. I had a couple of steroid injections, but the second one didn't work so I gave up on them. They also thinned my skin, which is not desirable when you're ripping at your own skin! During the final weeks of my pg I took dex, which got rid of the itching, but I tapered off post-preg as they hoped my itching would go down.

It hasn't gone down and comes and goes. It's with me most of the time though, I may get a couple of week break when I sleep through the night. I currently take chlorphenamine at night to help. I use E45 cream, as it is the only thing out of MANY moisturisers etc that I tried that didn't make me itch more, or make my skin feel greasy / uncomfortable.

Pregnancy initially made me flare up, and I think stress really makes me flare up, and having a young child can be very stressful! After years of being a sunworshipper, I now accept I have to avoid the sun, after a flare last year.

I'm afraid I do drink coffee and moderate alcohol-- I've given up alcohol for periods at a stretch, and it hasn't stopped the itching. (And of course all the way thru my pregnancy!) I may experiment with the coffee and see if that makes a difference. Any other diet /lifestyle tips would be gratefully received. I do exercise as much as I can, and am relatively active. (Altho still 15lbs overweight from pg which is nearly impossible to shift with fatigue / hypothyroid / a baby that prevents going to the gym!)

I'd love to chat with anyone who understands this itch and has any advice. I mainly came to find a forum tonight because I find it is so hard for friends and family to relate sometimes, when you complain you are tired. I am currently staying with my mum for a bit of support with the baby while we have house renovations done. I was so exhausted / fatigued today it was hard to talk to her, and when I try to explain she says she doesn't sleep much either. Same with hubby. The problem is, no-one wants to hear that you're tired, but this lupus thing is a special kind of tiredness, if you ask me! So tired I could just fall over some days. POOR US. Just wish I didn't then get made to feel like a moaner or slacker when I express how I am feeling.

Anyway - thanks for reading if you made it this far. If any of this rings true to you -- first diagnosis during pregnancy, itching -- I'd love to hear.

Hi Caroline;
Welcome to our family where we certainly do understand the fatigue. It is a debilitating fatigue that others just cannot fathom. A dear friend of mine described it as if you laying underneath a lead blanket and just cannot move. All of us here truly understand how it feels.
I am glad that you are finally being treated for some of your symptoms. Is your itching from a skin rash? There are so many rashes in Lupus and their symptoms are quite varied. I am sorry to hear that the hydroxychloroquine did not help you. Was it Plaquenil? If not, perhaps you can talk to your doctor about the use of Plaquenil. It has worked well for many of us.
Try putting "Itching" in the search box above. That will bring up all posts with that subject. You may find that someone has talked about what helped their itching and perhaps it might give you some options.
In the meantime, welcome to our family. I am glad that you joined us and you will find that this site is filled with kind, understanding, helpful, and caring people.

No - the itching is without rash, which I understand is unusual. I do get the malar rash, but the itcing is all over my body, without rash or lesions. Very strange!

I'm not sure if hydroxychloroquine was the brand name plaquenil - are they not the same thing? I have my routine appt coming up and will ask again.

Thanks for the understanding on the tiredness. It's horrendous. Too tired to talk, I keep dropping things, all I can think is that I just want to crawl into bed, which makes day-to-day feel miserable. Fortunately I am an optimist with a short-memory, so at least I reset every day. Thankful for that.

Love to hear any more thoughts on the dreaded ITCH if anyone recognises this. Will have a search through now too.

Welcome to WHL.
That you are tired is quite normal, most lupies are. For me its not so much tiredness as in sleepy, it is more fatigue, like weakness, not able to do much because I feel exhausted.
I have itching in certain places but not all the time. Last night, my ringfinger and middlefinger on my left hand were itching for hours ( no rash, no redness), every time I would scratch it would start to hurt. Some days my breast will itch, which is driving me crazy, another day my leg will itch or my arms. Luckely it doesn't last for more than a few hours and is usually gone the next day. I have tried lotions too because I thought it was dry skin, but that is not the case.
Again, welcome.

Debbie

I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

I get itching too, but in various places at various times. I have used so many different creams. Sometimes hydrocortisone cream will stop the itching after a while, but not right away. The strength I use is over the counter 1%, probably not strong enough. I am not sure if you can get a stronger strength through a prescription.

No i get it, this all over deep itch that no matter how much you itch you skin it itches. I would go crazy from the itching without benadryl, yes i know the itching is not from allergies but it works great for me. Also corona multi-ointment(its behind the pharmacy counter all you have to do is ask) helps a lot with itching the benadryal doesn't fix, it's greasy i know but i put it on at night and by the morning my skin isn't greasy. Hope that helps, it took me a long time to find a combination of things get rid of the itching because it will drive a sane person crazy